Grief

Join us as this season's co-hosts delve into the concept of grief today. We will discuss how each of us perceives the notion of grief and how we've processed this through the years. 

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Welcome to Linked Together a family center program. I'm so excited to have you along as we share our stories Hey, welcome back, you guys. I'm so excited. I mean, today is going to be a tough one. We're going to talk about grief, what it is, what it's not. We've sort of talked about this, even prepping this, and we kind of all stopped, like, we don't want to talk too much. We'll save it for this conversation. So I don't even know where you guys stand on this. But there's that idea that, you know, when you get a diagnosis that families go through grief, they go through the stages of grief that it is you're grieving the child or the person that they were going to be or who you had built up in your mind when you had that positive pregnancy. And thinking about that and I want to get your perspectives. I'm not sure if I should lead off and tell you how I feel about it, but yeah, I think I will. So I, I don't know that it is grief. I've kind of said this, that yeah, there's a lot of emotions and sometimes it's sadness and sometimes it's other stuff. But I almost wish there was another word. I know some communities and their languages, they have 50 words for rain or whatever that is, right? Like, like I always feel that when I put grief in and thinking about that, I think about true grief when someone passes or you lose something, you know, even a pet or whatever. And what that is versus some of the emotions I've had and gone through, I just don't feel like it's the same because I feel like they're still here, they're... And again, not that I haven't cried, not that I haven't been upset or all angry, I guess whatever those five stages of grief, right? Like I've been all of those, but it doesn't for me, it just doesn't fit. So I was wondering how you guys feel about that? And again, I think if you have different. Totally fine, because I think that showcases how we can have common things and just different perspectives. Okay. Well, I have some opinions on grief As you know! I think for starters, I think the word grief is thought of as death. And that's how we use the word grief. And maybe it is grief what we're feeling because it is the, the losing of something. So we're losing this idea of what we had expected. But because we use the word grief in society to mean death, we think of, you know, our children are not dead, they're alive and they're here and they're going to thrive and they're going to to do the best that they can do. Their life is important and meaningful. So I think that that's my first thing, is that the word grief is used to represent death. And that's why I have an issue with saying that we're going through the grieving cycle or that that family is grieving. But I do understand that there's lots of emotions and the emotions themselves may seem like the grieving cycle, right? You go through anger, you go through denial, you go through self-doubt. But you also get to the point, hopefully and most parents, I think, get to the point where they come to acceptance and then they come to a point where not only are they accepting of the disability, but they are now educating others and it's just a part of their life. It becomes more than just acceptance it becomes just their their world. And that's the point where I would love to see more families get to. But I think because we use that word grief, it sets the stage like we've mentioned before. Right. It automatically triggers different thoughts and emotions in other people and people who aren't going through the process of acceptance that's kind of what what I would like to call it is a process of acceptance. I don't know. What do you think about that? Well, so I'm with you, Marisol, in that and you know, it's really hard to be in the NICU and and see your child struggling to live and not be hit quite hard. And it it it I don't think the word grief was really the right word either. It was just it was so difficult to be a part of that. And and then to see it going on all around you and all the other beds as well. So that was that was very powerful. But along the line, I will also say, too, that because of my background and just who who I was and and some of my beliefs that I never held on to that for very long and just said this is this is this is who our children are they were made just in exactly how they were to be made and given to us. And so as parents, if all we're doing is grieving and finding it hard to move through that and on to flourish and have purpose and help them have purpose, then we're not honoring the lives we were given to take care of. And I just wanted to get to that point where we were so honoring Emily and Mac for in all their glory of who they are and I've sadly met families whose parents they've never gotten past the grief of the child they thought they would have. And I'm talking families who have grown children who just never were ever fully able to come alongside and just say, I got through that and passed that. And, you know, I try to I try to understand it's just different than how I viewed it all. Mm hmm. Um, I do believe I have, to some degree, grieved. Um, milestones that I hoped Elijah would reach, that he hasn't by the age that my other kids did. Mm hmm. So I think a part of me grieved that he didn't walk by, you know, 15 months or nine months for my daughter or I grieve that he he can't verbally, with words, communicate. So I do feel that I have experienced some form of grief. But like you, that's not a place that I want to live. Um, I think for me, and I think all of y'all have touched on it a little bit for me is understanding that his, his method is different. How he communicates is different. His mobility is different. And, and, and I needed to accept that it was different and be OK with it being different. Um, I remember one of the first counselors that, that we talked to, they came, they were available to us through our through hospice. I remember having a conversation with her and I remember feeling like she wanted me to be sad. Mm hmm. I was already sad. I was already emotional. But I remember her feeding that rather than encouraging me, you know what I mean? Like, she was just. I just and her expectation of how you should process. Yeah. It really was about, like, her expectation and how you should be processing it. And so here's the stages, like, like I said, that's why it always drives me crazy because it's sort of like, OK, well, you just got the diagnosis right. You should be. Right here on the map. And that's exact. And that's exactly how I feel. I just and I remember I remember, you know, talking with my husband and I was like, I mean, not that I didn't want to talk to her ever again. I was totally fine with her coming over with the hospice team. I was totally fine with her having conversations. But because I'm an adult, you know what I mean? It was when they started offering services to our children. Oh, that I began to say, you know, let's take a step back because I didn't want her to encourage my daughter because she was talking to her more so than the boys. I didn't want her to encourage her to be sad, you know, like this is this is what we're dealing with and it's OK to be sad. But her her approach was just completely different than than how we wanted to handle it. And I can remember after that conversation that she had with my daughter, my daughter said, "She just kept asking me, how did you feel? And then when I would say how I felt, she would say, are you sure? Is that really how you feel?" And so I just you know what I mean? So I think I think that speaks to the that expected grief. Like they expect you to feel a certain way. That's a requirement, right? Like, why aren't you feeling that? What's wrong with you? That you're not living in that sadness and grief? Yeah. And for us, it was it was like you. For us, it was our faith and we were hopeful. And so we I don't feel like we were in denial. Right. Because we've lost. Yeah. You know, because we wanted a different outcome. So, you know, it was just but but I agree. Like, I think I think grief is a word that we use when something doesn't look like we thought. And that that doesn't that doesn't mean that you don't grieve, but that doesn't mean its grief. I you know, on the other thing is to my husband handled, you know, that he had a different way of handling it. We weren't always in the same place. All the time. And he was the one that remarked, they're just these moments that he'll be driving and see a kid playing soccer on the soccer field. And this was when they were younger and think, Mac's not ever going to be doing that. And that that would be when it wouldn't it wouldn't last long, but it would just be these little moments like that. And so he and I have talked a lot about it. And and I think the strength of our marriage has been it has been strengthened through this process, thank goodness, because not a lot of times it doesn't always happen that way. But that that's why we were also get able to get through those hard times, whether they lasted a little bit longer or they were those momentary brief instances because we were we were moving through it together. Yeah. And I think those instances, it's just a realization, right, that our child is different and they're going to be different today, tomorrow, and, you know, ten years from now or whatever in the future. But I wouldn't call that grief. Yeah. I think that's just processing. It's processing your feelings. It's processing the stages of life that you're going through. You're going to feel those intense emotions when your child is five and going into kindergarten. And then, you know, when all of your children and your kids friends at school are playing baseball and your child's not playing baseball or getting their driver's license and your child's not getting their driver's license, I anticipate to feel those moments a lot in my life, you know, but you can't dwell you can't live in that because then you can't move forward. And if you can't move forward, how are you going to help your child move forward? Exactly right. So as parents, we just have to do I mean, it's about getting building this little bringing up this little child. And raising them to be the best human being they can be. And, you know, I'm sorry. I was just going to say just just playing off that, is I didn't want my children to pick that up from me that and then to feel like I'm causing mom to be sad or I'm, you know, I'm causing this these concerns. And so you really want them not to to resonate with those times. And so I worked really hard for that, not to happen. And again, that honoring of who they are. But I will say that my son will have the ability in high school, he cognitively he was really processing it and realizing there are people around me doing things that I'm not ever going to do. And that was very hard for him as his own person. And grieving that situation. And so that was a really hard time that those teenage years when he was here, that full kind of realization of how very different his life is. And so it was it was tough. Those were bumpy times. I won't I won't tell you anything otherwise. I anticipate that we'll be going through some of that. but yeah, he's he's he's made it through. and very, very happy with where he is. What about unexpected joy? So to me, like, grief sort of, again, feels like there's this expectation sometimes I think that I get from others that you're like,"Oh, you just must be so sad all the time." you're like, "oh, my gosh." The pity."Your life... Like, Oh, I just feel bad, you know? I just can't imagine," Right? Like, like A like we had choices, right? Or, B, you know, but but then having said that, I wouldn't have chosen differently. I wouldn't give back who my people are. I've loved them and have found joy in that. And again, to me, there's that piece of it that I feel that when people kind of talk about this sadness, that they don't recognize the joy in it, too. That comes out of it. You know, I had a social worker asked me one time"If you could change one thing for Elijah or if you could change one thing from the experience. If you could change one thing for yourself, what would you change?" But it had to relate to that situation with Elijah and and and, you know, sitting there thinking about it, I was kind of like that, you know, like, if I could change anything, it would be giving him the choice to choose because I'm good with who he is. I'm satisfied with who he is. Right. You know, and, and for me, he doesn't know anything but who he is. He doesn't know that he's different, you know what I mean? Like, he that's not something he's, I think, aware of. So so I wouldn't create a different scenario for him. You know, thinking about the the playing ball. We played football for one of the other boys. His birthday is the day before Elijah's so we went to play football for his birthday. And what did they do? But they passed Elijah the ball, and as he held it, my husband pushed him in his wheelchair as if he was running the ball. And so there's there's a ways for him to be included. And now with our family, but like Marisol just said, I anticipate that if he continues this life, there will be things that he'll miss out on. But does that mean his life is any less lived? You know what I mean? Like, I think which is I think I just choose not to be sad about it. You know, I have our we have our moments. And we think about this, though. I just for my own mental health, I just I can't wallow in sadness and pity. And yeah, I just I choose to find that joy and the unexpected joy wherever I can in this situation. So I think that's a great question, you know, because honestly, it makes me think and I think this would have been my answer if anybody would have ever asked me that, I would have said it's not them that I want to change. I would love to change the world. So it wasn't so hard for them so that they can move through the world and be who they're supposed to be or who they're meant to be without everybody else's expectations right? And honestly, that goes for every individual. Like like honestly, I'd move that past everybody. It to me, it's like I wouldn't change anything about anyone. It's just I would make the world it's one of those pie in the sky sort of things, right? Like this is where when I start talking about some of those things, but it's, it's honestly, I would take down those barriers and let. Why does it have to be so hard sometimes? Yeah. Open. Open every perspective. Right. And inclusive. Yeah, make it inclusive. So that's the next step, right? After acceptance is inclusion. And belonging. Belonging. Right. Not inclusion as just being present. Check you're there, right? Real submersion, inclusion being part and belong. Yeah. I had a conversation with my daughter one time about inclusion and and I told her the best way that I could describe it. I told her inclusion is being invited to the party and then being allowed to dance, you know, because a lot of times I think I think there's this misconception that inclusion means, you get the invitation. The invitation is right. And this is so much more than that. It is is really being able to belong and be a part when you're there yeah. And unfortunately, our society isn't built for that. There's still so many ways that our children are not included in education and building things in certain systems that are meant to serve them. And I think that's why people believe they're experiencing grief. Yeah. And I will say to it kind of goes with this and it's my perspective of that word special for me because I've heard that all through the years. Of his special needs or the accommodations, he's he's got to have something different and special. And I finally have reached that conclusion. No, he really... we need for the world to meet him where he is, but he has human needs. He has the same needs for friendships he has the same needs to be educated to the best of his ability. He doesn't it's no more special than anybody else what he needs. He needs the same thing. Everybody else needs and everybody else is striving for. And so work with us and work to to meet him where he is or Emily where she was and help us to get there. But it's the same needs as every other kid in the class, every other kid on the ball field, whatever. Instead of trying to make your child fit into this nice little neat box. You have to think outside the box. Life is full of unpredictability, and our children are unique. They're different. They have, you know, special gifts. But we got to tap into those. And I think that thinking outside the box, including all our ways of learning and approaching children, is is important and that we don't see that enough. And I'm like you, I wouldn't trade my two kids for the world. So neither would I. I they might have their own perspectives about that, but that's not my that's I took them just the way they came and was so thrilled that they were with us. Absolutely. I, I have found lots of joy in my children. They are nothing like what I expected and my life is nothing like how I expected. But I have so much joy every day looking at both of them. I think part of the my, my thought is with issue, the issue with grief and joy is that from an outside perspective, they think of disability as a burden. And so when you talk about having a child with special needs and I've heard this many times whenever I say my daughter has Down syndrome, I've heard it from my own doctor's office. The nurse there. I'm so sorry. Why? You don't have to be sorry. I'm not sorry. She has brought so much joy into my world. There's absolutely no need to be sorry. But by saying that it implies that you view my child as a burden, as something less than what she is, something negative. And that is not the case. Not in my eyes. And so I think that that a lot of times that's linked with that word grief. Right. And I have a hard time with that. That that's one of the reasons I have a hard time. I find so much joy and in my children and and yes, we have lots of moments where I cry and I have no idea what the future's going to bring. But I think a lot of times, you know, a lot of people who find or see the burden or the problem or the grief even, I think a lot of times it's because they're looking at it from their eyes. You know, it would be a burden for them. Maybe, you know, maybe they themselves would be grieved by living in the moment, in that moment. I think, you know, when when people, "Oh, I can't imagine" It's because they really can't. But it's the heart. Like they couldn't imagine having to cater to the needs of of of another individual. Like we cater to our children. And and so I just you just extend a little grace to those folks. You know, I think they just they don't I don't think everyone is intentionally commented or or misreading or trying to put something out there that that isn't I think a lot of times they're coming from a place of they don't know or their experiences are just completely different. And I think society has a lot to do with it. Just the way society views children. World view. Yeah, yeah. The whole world. You know, so it's not intentionally, but that's how it comes across and that's what the information they're getting is. I don't think people realize when they say, I could never do what you do. And I think, well, if your child happened to be born with a disability, are you really saying you would not do this? So I just don't think that they even are realizing what that statement implies. And when they say, you know, the I'm sorry, they just not they're not putting all of those pieces together because they they as you said, they just don't have that experience, that background that helps them get it just a little bit more. But I'll tell you, when I feel joy is when my children have surprised others with with the unexpected because there's such expectations. And when they surprise them with the incredible humor that they both have with the different abilities that they both have, but that they can bring them to bear in such wonderful ways. And I just get so much joy and seeing people realize, oh, my gosh, he's really funny and have not given him the benefit of the doubt of thinking he could he could crack some great jokes. Marisol knows. He' really funny. So but that that brings joy and the tiny little milestones because Mac didn't hit any milestones. I threw that word out the window long ago. Emily, too, but when they got to whatever little next marker was in their life, there was such joy. We had such celebrations of the smallest things because they were so meaningful for our family. So and I think too, you know, just thinking about that, if, if we grieve the fact that they're here but not what we expected how much harder would grief be if they weren't here? You know, like I was just thinking about that, you know, just from the milestone perspective, um, if I, if, if I grieve everything that Elijah doesn't do, how can I find true joy in the things that he does? You know, I just I don't know. For me, it's about choice, and it's about perspective and and and making sure mine fits what I believe and not what, you know, any other communities try to force on us or the health care space or anybody else like this is this is what we believe in. We choose joy. We choose to be happy about it and celebrate. Celebrate every moment, the small moments. And every day is a gift. Yeah. Well, it's been a gift talking to you guys again, and I really appreciate it brings me lots of joy. So thank you so much. Again, for sharing everything. I, i just love it. So thank you. Thank you. Been wonderful. The great conversations that we had today is supported by the Health Resources and Services Administration of the US Department of Health and Human Services. As part of the work of the National Genetics, Education and Family Support Program, the contents or those of the participants and do not necessarily represent the official views of nor an endorsement by HRSA, HHS, or the US government.